Building Care Teams
When it comes to being diagnosed with Parkinson's, it's important to assess who in your circle of family, friends, neighbors, and community can be of help. This is often referred to as your "Circle of Care." By naming and building out your circle of care, you can identify who can help you accomplish what needs to be done, but also see gaps where you might need to hire additional support in the future. Your circle of care is your inner circle, the people you call upon first - the ones that love you the most. So often, these members of our circle want to help us - they just don't know how. It is important that we communicate clearly and well with them about PD.
Our family can be our biggest advocates and greatest help in time of need for most of us. But for some, our families may be small, scattered, or not fully engaged. By naming who in our family is a willing contributor to help and how they can help - we can better understand where we may need to request additional services. It's also important to assess the strengths and abilities of these family members. One person may be great at handling finances and is best as the Power of Attorney, the other may be better at making sure you have everything in your home setup safely or by offering more hands-on care. By understanding who can do what and working to share the duties to assist, everyone can have a more balanced and dedicated role to helping you when you will need it.
Name the members of your family: spouse, children, grandchildren, siblings, nieces, and nephews
What are their ages?
Where are they located?
How can each one best help you?
What are they willing to do for you?
By understanding your needs and assessing the availability and strengths of your family members, you can put together a fair and balanced schedule that can help you with your needs.
Let's face it, we all come from very different family dynamics. For some of us, we may not have a spouse or partner. We may not have kids or our family may not live near us. Regardless, you will not be alone in this journey. You may need to navigate things a bit differently, or need to call upon more paid services, perhaps even choose a community living approach for your overall wellbeing. The PAA is here for you to help you navigate these areas, and we can connect you to the best groups to support you throughout your journey. Nobody walks this journey alone.
One way you can get the assistance you need is by choosing to work with a Geriatric Care Manager. These social workers can help you define a long-term care plan and put it in place, securing your future care.
Like family, the same can be attributed to your closest friends. So many times, our friends want to help us -- they just don't know how. So many times, they say -- "Let me know if you need anything," but we don't even know where to begin. What if the next time they said that - you could just tell them. Then, they could plug into the ways they could help you the most because they already understand your needs.
Your neighbors can be a very helpful component to your circle of care, especially if you were to fall and need immediate assistance, or even traveling and having them help feed your pets or get your mail. They might even roll the garbage out to the end of the driveway for it to be collected for you. It is up to us to develop the spirit of community - assisting our neighbors however and whenever we can, and allowing them to assist us as needed.
Many of our churches have gotten extremely large. There are so many programs, activities, and opportunities to serve. But so many times, we don't ask or even know what programs are available to us. Meet with your clergy and find out what programs might be available to help assist you. This could offset some costs of care.
Having a Circle of Care defined and understood isn't always enough. Putting the Circle of Care into action is what makes it work. Whether your primary care partner is your spouse, partner, child, parent, or friend, your relationship with this person will transform throughout your Parkinson's journey.
Soon after your diagnosis, your care partner may quickly embrace the role and seek to do as much as possible. They may deal with the uncertainty of diagnosis by controlling medical appointments, treatment decisions, and lifestyle changes. They may be vigilant about monitoring your movements, carefully noting any changes from day to day. Conversely, some partners choose to deal with the uncertainty and fear accompanying diagnosis by distancing themselves and avoid getting involved with medical appointments or treatment decisions. Others take a middle-of-the-road approach, balancing their involvement in a way that allows you to remain in primary control.
There is no right or wrong approach. Talk with your care partner about your own concerns and how you would like to handle Parkinson's together. Decide the extent to which you want your care partner involved in your treatment and remember that your care partner can be a powerful advocate for you in many circumstances, from medical appointments to get-togethers with friends.
While you may be diagnosed with Parkinson's, your primary care partner has now had Parkinson's enter their lives too. Working through it together and expressing emotions and communicating clearly will make the journey easier.
Disclaimer: At PAA, our desire is to be a GO TO Resource for everything you need for the Parkinson's diagnosis to live a quality life with PD. We want to make sure you have all resources you need as you plan your journey with Parkinson's now and into the future so that you can reflect and discern what decisions you want to make with the appropriate insights to help you choose and build a plan that is unique as your journey. The PAA, nor the contents on this website, should never be a replacement for professional expertise and guidance from medical, legal, or financial professionals. Our goal is to equip you for those conversations. As such, the PAA cannot be held accountable for your choices and outcomes while navigating your Parkinson's condition.
Davis Phinney Foundation for Parkinson's. Social Connections, Relationships and Community. Chapter 13. Pages 222-223. Every Victory Counts, Your Go-To Resource of Essential Information and Inspiration for Living Well with Parkinson's. "Manual." Sixth Edition, 2021.